A Hummingbirds' Guide to M.E.

The M.E. Society of America write:

M.E. is not a fatigue state, and fatigue is not a defining symptom of M.E.

The defining characteristics of M.E. can be easily outlined without reference to "fatigue." Fatigue may be a minor symptom of M.E. [in some patients] just as vomiting or numbness may be symptoms of M.E., but fatigue cannot be a defining characteristic because not all patients have it, just as not all patients have vomiting or numbness [and because the symptom is minor or trivial compared to many others M.E. patients experience].

 

Fatigue is immeasurable and largely indefinable. Fatigue is a normal phenomenon as well as being associated with almost all chronic disease states. Fatigue, which is simply one of the common features of healthy life and disease, neither defines M.E. nor clarifies the illness. The term ‘fatigue’ does cause disparagement to those who study this serious debilitating illness and those who suffer from it.

Byron Hyde MD in ‘The Clinical and Scientific basis of ME edited by Byron Hyde MD. p x

 

ME [is] a loss of the ability of the central nervous system (CNS) to adequately receive, interpret, store and recover information. This dysfunction also results in the inability of the CNS to consistently programme and achieve normal smooth end organ response. [It is a] loss of normal internal homeostasis. The neurochemical homeostatic events continue to be employed uselessly and to the detriment of the organism. This modulatory biochemical complex, biologically derived over the millennium to assist the organism, destabilises the autonomic neuronal outflow and the individual can no longer function systemically within normal limits.

Byron Hyde MD in ‘The Clinical and Scientific basis of ME edited by Byron Hyde MD. p xi

 

(Commenting on the CDC definition of CFS:) The problem with fatigue is that it is neither specific, definable nor scientifically measurable. Fatigue is both a normal and a pathological feature of every day life. Every normal person gets fatigued. Fatigue is a common feature of much major psychiatric disease and major medical disease. Since fatigue is such an integral part of many illnesses, by calling fatigue the primary characteristic, the authors necessitated the elimination of hundreds of other diseases. To truly follow the criteria set out by the CDC definition probably makes 'CFS' the most expensive illness to investigate of any known disease. Fatigue is not an object, it is simply a modifier in search of a noun.

Also, taking fatigue as the flagship symptom of a disease not only bestows the disease with a certain Rip Van Winkle humour, but it removes the urgency of the fact that the majority of ME symptoms are in effect CNS symptoms. To most physical ME scientists and clinicians ME represents a major attack on the CNS by the chronic effects of a viral infection.

Byron Hyde MD in ‘The Clinical and Scientific basis of ME edited by Byron Hyde MD. p 11-12

 

ME is a systemic disease with many systemic features, but it is characterised primarily by CNS dysfunction [and not by] fatigue.

Byron Hyde MD in ‘The Clinical and Scientific basis of ME edited by Byron Hyde MD. p18

 

Central nervous system dysfunction, and in particular, inconsistent CNS dysfunction is, undoubtedly both the chief cause of disability in MEand the most critical in the definition of the entire disease process. Of the CNS dysfunctions, cognitive dysfunction is one of the most disabling characteristics of ME. When this simple fact is understood, it become immediately apparent why this is such a devastating disease for children, students and adults, both within and outside the educational system. Today, few work situations exist where consistent use of education and developed cognitive skills are not necessary to maintain a place in the work force.

Patients can return to work with pain, with muscle spasm, with fatigue, with motor dysfunction, but when the patient consistently has difficulty in making new memories, recalling old memories and coordinating new and old information he becomes of little use in the modern work force. It is the combination of the chronicity, the dysfunctions, and the instability, the lack of dependability of these dysfunctions, that creates ‘the most chronic of chronic disabilities.’ It is these combined acquired, chronic brain and physical dysfunctions that define ME.

Byron Hyde MD and Anil Jain MD in ‘The Clinical and Scientific basis of ME edited by Byron Hyde MD. p 43

 

To suggest that the diagnosis of M.E. is covered by the term ‘fatigue of mind and muscle’ is equivalent to defining diabetes as merely polydipsia and polyuria and ignoring the eye, the renal, the CNS and arterial consequences which may ensue.

J. Richardson in ‘The Clinical and Scientific basis of ME edited by Byron Hyde MD. p 92

 

The term "fatigue" does not do justice to what people with [ME] actually experience. People with [ME] often find themselves at a loss for words when it comes to describing how they feel. Patients come to doctors saying they feel "crushed," "totally wiped out," "comatose," or "paralysed" or use descriptive phrases such as "I feel like I’ve been hit by a truck," " I can’t get out of bed," or "I can’t lift my toothbrush." The truth is that [ME symptomatology] is unique. In its severe form it can be all-encompassing, which can be devastating. It can rob a person of livelihood, family, career, hope, will, and feeling. The terms currently available do not convey the profound loss produced by [ME]. More than an understatement, however, the word "fatigue" is misleading because its widespread use has led to a dismissive attitude on the part of the medical establishment, which views fatigue as a normal part of modern life.

There is nothing normal or natural about the [symptoms] experienced by people with [ME] . Unlike the state of tiredness a person might feel after a busy day, the [symptoms] produced by [ME are] not relieved by a good night’s sleep, a workout, a protein snack, a change in lifestyle, a vacation, or any of the other measures that normally help the healthy person "recharge." The reason none of these measures work is self-evident. [ME symptomatology is] not the natural product of exertion. It is a reflection of the profound metabolic, neurologic, and immunologic dysfunction wrought by illness.

Considering the lack of adequate terminology to describe [ME symptomatology], it is incumbent on the [ME] community - clinicians and patients alike-to find new terms and expressions to convey what is meant by "fatigue."

Verillo and Gellman in 'CFS: A Treatment Guide' p 77

 

Over the course of two International Association of Chronic Fatigue Syndrome (IACFS, formerly the American Association of CFS) conferences, there have been suggestions that the name CFS be changed to M.E., while retaining the CFS definitions as a basis for such change. This does not seem to me to be a useful initiative: it would simply add credence to the mistaken assumption that M.E. and CFS represent the same disease processes. They do not.

M.E. is a clearly defined disease process. CFS by definition has always been a syndrome.

At one of the meetings held to determine the 1994 U.S. Centers for Disease Control and Prevention (CDC) definition of CFS, in response to my question from the floor, Dr. Keiji Fukuda stated that numerous M.E. epidemics—he cited the Los Angeles County Hospital epidemic of 1934, the Akureyri outbreak of 1947-48 and the 1955-58 Royal Free Hospitals epidemics-- were definitely not CFS epidemics. Dr. Fukuda was correct.

The Nightingale Definition of Myalgic Encephalomyelitis (M.E.) by Dr Byron Hyde 2006

 

Although the authors of these definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion. The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state. Patients who conform to any of these CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable.

The Complexities of Diagnosis  by Byron Hyde MD 2003

 

Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would have told the students to search for an occult malignancy, cardiac or other organ disease, or chronic infection. The concept that there is an entity called chronic fatigue syndrome has totally altered that essential medical guideline. Patients are now being diagnosed with CFS as though it were a disease. It is not. It is a patchwork of symptoms that could mean anything.

The Complexities of Diagnosis by Byron Hyde MD 2003

 

The invention of Chronic Fatigue Syndrome has to be one of the most curious cases of inventive American scientific imperialism that one could imagine.

Dr Byron Hyde 2006

 

Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance.

Dr Byron Hyde 2006

 

The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes.

The Complexities of Diagnosis  by Byron Hyde MD 2003

 

They didn’t understand that I wasn’t simply tired. I tried to explain the ‘fatigue’ to them as the ‘anaesthesia wave,’ likening it to that moment right before surgery when you realise you’re about to lose consciousness. I thought that might help them understand its severity, and my inability to ‘fight if off.’

Nadine Goranson in ‘Stricken’ (edited by Peggy Munson). p 59

 

The symptoms of [ME] resemble and improbably hypoxic state, so far from normal tiredness, so much more of an all-body impairment, than the word fatigue could ever convey. As Chris Norris wrote in New York Magazine, ‘If this is fatigue, its relationship to workaday weariness is as Satre’s nausea to an upset tummy. I have been tired before. This is not tired.’

Peggy Munson in ‘Stricken’ (edited by Peggy Munson). p 114

 

At the turn of the millennium, the public still lacks a real grasp on what ME patients are dealing with. Because of illusions that ME is simply a disease of tired people the public has large been deprived of accurate information.

Lynn Michell in ‘Shattered: Life with ME’ p xxii

 

[Legitimate descriptions of the illness are] a far cry from the hopelessly inadequate description of ME as ‘chronic fatigue.’ The distinction between fatigue and ME needs emphasising. If you are tired all the time, you do not have ME. If you are feeling drained following a viral illness but are recovering over weeks or months, you do not have ME.

Lynn Michell in ‘Shattered: Life with ME’ p 6

 

This is not fatigue. This is a state of overstimulation which results in near or total collapse. One of the things that has been shown over and over again is that biologically [people with ME] have an inability to respond to stressors [or stimulus.] Although ME is sometimes described as a stress-related illness, what stress means in this context is ‘the non-specific response of the body to any demand.’ So, while healthy people cope with the demands which assault their senses, responding appropriately to what is relevant while ignoring what is not, people with ME have lost the ability to manage the sensory input of their environment.

Lynn Michell in ‘Shattered: Life with ME’ p 28

 

A central problem is the word ‘fatigue’ which doesn’t come close to describing how sufferers can feel – comatose might be better. Like most people with ME I have acquaintances who say, ‘Oh I feel tired at 4pm too, and would love a snooze.’ But that’s not it. People with ME are so finished that they have to lie down. There is no other option. Minds and bodies do not function. This is nothing like fatigue.

Lynn Michell in ‘Shattered: Life with ME’ p 88

 

If the medical administrative staff are anything like the students they work for, they will be told little or nothing about Myalgic Encephalomyelitis (ME), the illness that has kept me largely bed-bound for the past 15 years. I’ve lost count of the times medical staff have said to me: "I don’t really know very much about ME. You get tired a lot, don’t you?"

No. I’m 35 and haven’t been "tired" in the conventional sense of the word since I was a teenager. As anyone with severe ME will tell you, it has nothing to do with being tired and everything to do with being physically ill.

On the many occasions I am unable to watch TV or hold a conversation, sit upright or walk more than a few steps, it is not because I am "tired". It is due to the fact that there is some catastrophic, metabolic imbalance within my cells that leaves me feeling poisoned and weak to the point of collapse. Muddying the waters further is the fact (sorely lamented by many sufferers) that ME is sometimes referred to as Chronic Fatigue Syndrome. Trust me, "fatigue" or "tiredness" don’t even register on the scale of how life-shattering an illness this can be. Tiredness is to ME what forgetfulness is to Alzheimer’s disease.

Sick, Not Tired by Ciara MacLaverty

 

Circa 1984, around the time when San Francisco immunologist Jay Levy was investigating the cause of the "gay pneumonia," University of California medical school professor Carol Jessop began seeing women patients who presented a baffling array of signs and symptoms: fever, lymphadenopathy, sore throat, visual and other neurological disturbances, and paralytic muscle weakness. The worsening of these symptoms upon minor physical exertion formed a common denominator in all cases. But when Jessop began subjecting the patients to exhaustive tests to rule out autoimmune and other diseases, male colleagues scoffed, calling the tests "million dollar workups on neurotic women." That derisive attitude set the tone for both medical and media discussions of an enigmatic illness for years to come. The problem was exacerbated by the 1988 Centers for Disease Control case definition -- set in stone in the Annals of Internal Medicine -- when the C.D.C.'s Gary Holmes labeled with the word "fatigue" a crippling disease of probable infectious etiology.

A Review of OSLER'S WEB: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Maryann Spurgin

 

Fatigue is not a disease. It is a symptom of many diseases. Since there is no single underlying condition behind fatigue, by equating C.F.S. with unexplained fatigue, federal officials can say that there is no single underlying condition behind C.F.S. While there is nothing unreasonable about the claim that C.F.S. has multiple causes what is unreasonable is the notion that C.F.S. is many unrelated diseases grouped by their shared symptom, fatigue. After excluding patients with the disease by excluding the whole complex of classic symptoms and complications that accompany C.F.S., federal officials went on to include those who don't have the disease via the symptom of fatigue. With the latter they "recognize" the disease without recognizing it: A truly effective system of repression is one that propagates the impression of its openness and fairness.

A Review of OSLER'S WEB: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Maryann Spurgin

 

There is no necessary connection between a need for rest and tiredness: Rest might equally well serve to curb the exacerbation of pain and, of exertion-induced complications.

A Review of OSLER'S WEB: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Maryann Spurgin

 

The most striking feature of the illness was an incapacitating post-exercise muscle [weakness or paralysis] recovery from which is delayed for at least 24 hours, which is quite distinct from everyday ‘fatigue.’ All muscles are affected, including the heart. People with M.E. may suffer permanent damage to skeletal or cardiac muscles, as well as to the liver, pancreas, endocrine glands and lymphoid tissues. Because of damage to the hypothalamus, pituitary and adrenal glands there is not only muscle but joint pain. Pain is often extreme and intractable and many patients can walk only very short distances and require a wheelchair.

Sufferers sometimes have sudden attacks of breathlessness, problems with swallowing and voice production. Cycles of severe relapse, together with the evolution of further symptoms over time, are common in M.E. Death occurs almost entirely from end-organ damage, mainly cardiac or pancreatic failure. Because of many doctors’ determined lack of understanding, suicide in M.E. patients is not uncommon.

Martin J Walker in ‘Skewed’ p xxiv

 

The final statement of Holmes et al re-defined M.E. This new definition was perfect for the insurance companies but from this point onwards, those who had the serious and debilitating illness known as M.E. were lost, as were the origins and the cause of their illness. The North American CDC and the medical insurance industry had escaped from having to acknowledge the serious nature of an increasingly reported and specific disorder, together with the consequent need to supply treatment for it. Under cover of the most ubiquitous term ‘fatigue,’ they had wiped out an illness.

Within a short time of the re-classification of M.E., the voluntary agencies and the charities that dealt with M.E. sufferers were inundated with new members who were suffering from a wide range and different levels of tiredness-related illnesses. This had two immediate consequences; first, the most chronically ill M.E. sufferers were pushed from the central focus of campaigns by more able bodied ‘fatigue’ sufferers; secondly, by changing the name [and more importantly the definition] of the illness and thereby enrolling a greater number of affected individuals, the research waters became impossibly muddied and full of people whose illnesses had different causes, different symptoms and a variety of outcomes.

Martin J Walker in ‘Skewed’ p 156

 

Peterson tried to convey the quality of the pervasive symptom, calling it ‘absolutely striking – like nothing you have ever heard in taking histories before. This isn’t tiredness. This is a carpenter who says, "I can’t raise my arm to hammer," or a marathon runner who says, "I can’t make it to the corner."

Hillary Johnson in ‘Osler’s Web’ p 34

 

The euphemistic, benign sounding name [and more importantly, the focus on ‘fatigue’] suggested a trivial, volitional disability, one that could be shrugged off with vitamins, aerobic exercise, stress reduction, a good night’s sleep or sheer willpower. By casting its victims in the role of shirkers who chose to defy the nation’s Protestant work ethic, the name, in addition, had the subtle effect of inspiring hostility toward the victim. As one psychologist well versed in standardised systems of evaluating the psychological import of words noted, ‘Chronic Fatigue Syndrome has a real negative impact. The word ‘chronic’ is associated with chronic complainers, chronic whiners. And ‘fatigue’ is even worse.

Hillary Johnson in ‘Osler’s Web’ p 219

 

Cheney was not particularly interested in a patient’s level of ‘fatigue.’ He graded the disease instead by its progressive phases which be believed began with a mononucleosis-type illness and an up-regulated or hyperactive immune system. Then over the years it progressed to a neuralgic, MS like illness, with mild to severe dementia and an AIDS-like or down-regulated immune system. Cheney selected his patients based on their neurological signs and symptoms. All of this was a departure from the CDC’s criteria, which essentially looked fro one thing – disabling, unexplained fatigue – and excluded patients who exhibited unambiguous signs of disease.

Hillary Johnson in ‘Osler’s Web’ p 438

 

Fatigue is a totally indefinable concept. Fatigue is impossible to measure or quantify. Fatigue is so non-specific that it can be a common element in any acute or chronic disease and many psychiatric diseases. Worse, it redirects the medical and public attention away from the obvious Central Nervous System changes in these patients. Much worse, it makes fun of a serious illness. It has turned out to be a damning indictment to all M.E. patients.

Dr Byron Hyde 2006

 

In all M.E. epidemic or endemic patients the patients represent acute onset illnesses. The fatigue criteria listed here can be found in hundreds of chronic illnesses and clearly defines nothing.

Dr Byron Hyde 2006

 

There is nothing in your experience of medical school, residency, or practice with its gruelling hours and sleep deprivation that even approaches [what] you feel with this illness. Fatigue is the most pathetically inadequate term.

ME sufferer Thomas English in ‘Osler’s Web’ by Hillary Johnson p 461

 

‘The patients are not chronically fatigued.’

Byron Hyde MD (on M.E. patients)

 

 

As Professor Malcolm Hooper explains

A political decision was taken to rename ME as "chronic fatigue syndrome", the cardinal feature of which was to be chronic or on going "fatigue", a symptom so universal that any insurance claim based on "tiredness" could be expediently denied. The new case definition bore little relation to ME: objections were raised by experienced international clinicians and medical scientists, but all objections were ignored… To the serious disadvantage of patients, these psychiatrists have propagated untruths and falsehoods about the disorder to the medical, legal, insurance and media communities, as well as to Government Ministers and to Members of Parliament, resulting in the withdrawal and erosion of both social and financial support. (2001, [Online])

 

'It is the use of the term 'fatigue' that causes the greatest confusion in regard to disability status. Technically, fatigue is a state of recovery, and this does not occur in persons with [ME]. Occupational medicine physicians may argue that it is appropriate to work with fatigue, with the assumption that normal fatigue, like normal muscle weakness, will respond to increased activity. While this is appropriate for normal fatigue, it is usually not the case with [ME]. The central and most disabling symptom of [ME] is NOT fatigue.'

Dr David Bell MD

 

Looking through the various CFS criteria, I was struck by the fact  that yes, they do all require constant/ 'debilitating' fatigue - but they don't really describe what this fatigue feels like or involves.  Sensations such as headaches, nausea, dizziness, muscular aches, phono- and photo-sensitivity, lack of ability to concentrate etc are listed as separate symptoms.  Apart from the fact that I don't see how they can say that the 'fatigue' is debilitating - surely whatever sensations that describes are more likely to be another symptom of the entire debilitation than a cause of it - the very fact that one of the criteria's crucial symptoms is so subject to interpretation is probably the cause of our current problem!

Virginia B, ME sufferer

 

me is nothing oike fatigue, word only cauuses confuson. Wish only hd fatigue:(

Severe M.E. sufferer

When I first found out what I had, I knew somebody was trying to hide something -- chronic fatigue my ass!

Terry Sweet, M.E. sufferer

 

"I think it is the obsession with fatigue that allows doctors and the general public to minimise the debilitation and our inability to exercise or snap out of it.  [...] Anyway, I guess my point is that if you minimise the illness as merely fatigue then many people (including the doctors)  will see it as something you can push through.  After all we live in a society that doesn't respect listening to you body and resting when you need it - so a whole illness that encourages that behaviour has got to be just laziness.  The protestant work ethic is alive and well and does not believe ME is anything but mental weakness."

Tatyana, M.E. sufferer

 

No one fears fatigue.

Jill McLaughlin (on Resact)

 

i feel sick,foggy, achy, weak, dizzy, jangly but not yummy old fatigue: like you get when you have walked to the beach, or dug a garden bed, or shopped til you dropped.

Barbara LR. M.E. sufferer

 

Advertising fatigue or studying it or analyzing it by fatigue scales or holding fatigue conferences or setting up fatigue clinics is not going to help those with underlying neurological illnesses.

Jill McLaughlin (on Resact)

 

Paralysis from polio occurred in about 1 percent of those that contracted the polio virus. At the time that polio epidemics were studied many of the herpes viruses had not been discovered, were they there then contributing to these plagues. Do certain herpes viruses have a special relationship with the polio viruses in the same way HIV and HHV6 work together.

We may never know if the government continues to cover up the existence of ME by calling it fatigue and confusing the public and doctors and fostering mythical subgroups. Confusing the understanding of this disease by opening the door for the inclusion of a multitude of unexplained fatigue conditions and somatic syndromes that will choke off the support and investigation of Myalgic Encephalomyelitis.

Cesar Quintero

 

I miss fatigue. I miss feeling tired. I am never tired anymore with M.E. just very ill. It’s true I can’t do anything, but this is because I am ill and my heart and body don’t work properly, not because I am tired at all. I miss real fatigue. It is a joke the linking of ME and fatigue....  now everyone tired thinks they have it when M.E. in reality has nothing to do with fatigue whatsoever and all those tired people are missing out on being diagnosed with what they really have.

M.E. sufferer